young new user-wishes to hear tips from experts

lilbean95 wrote:He usually does surgeries for sleep apnea. The tonsillectomy is basically the first phase of a series of surgeries that might have to happen. After this surgery, I have to go for a post op sleep study and if I still have the apnea, then he's doing something called a UPPP. He said normally, for my case he'd just have the patient put on CPAP and that's it. But because I'm so young and by no means overweight, he'd rather do the surgery.

Did he tell you those surgeries are extremely painful? Did he tell you they are effective less than 50% of the time in treating sleep apnea? Seriously, run from this guy. You should try CPAP until you feel better and then see a sleep dentist as well in case you are a candidate for an oral appliance. I would never do those surgeries, seriously, chances are they will be a complete waste of time considering your throat is most likely collapsing and the cause of your issues. For the most part nothing can cure that outside of using a CPAP machine every night.

The UPPP especally (tho' tonsillectomy is a close second) always turns out to seem like a great idea going in, but after a few months to a year,most people need Cpap again but have a harder time making it work as the structures have now changed. Please do a search on the forum here for those procedures... don't do something (yet) you can't undo afterward - and you're so young - without a lot of research!!

I see that you are 16. Be sure and get your parents involved ( I'm sure they already are). Refer them to this forum andto ask any questions they want. I certainly would want the best for my kids!

Keep us posted.

What are your symptoms that lead to the sleep study?

Are your tonsils large?

As you can see, people are generally not in favor of UPPPs here, and part of the reason is that many doctors now do not think it's necessary to touch the uvula.

Did your parents research this surgeon well?

lilbean95 wrote:He usually does surgeries for sleep apnea. The tonsillectomy is basically the first phase of a series of surgeries that might have to happen. After this surgery, I have to go for a post op sleep study and if I still have the apnea, then he's doing something called a UPPP. He said normally, for my case he'd just have the patient put on CPAP and that's it. But because I'm so young and by no means overweight, he'd rather do the surgery.

Like others, I personally don't agree with this approach either. In my opinion, surgery for just about ANYTHING should be a last resort. And being so young, I would think the opposite way of thinking regarding the choice to pursue a surgery - rather I would say DON'T do the surgery. But I'm no doctor, so it comes down to you and you're PARENT'S trust in this particular doctor making the best choice for you and your circumstance.

Just on a side note of encouragement regarding CPAP. I to have just "mild" sleep apnea combined with excessive snoring and my sleep architecture has benefited since being on CPAP/APAP and I'm just approaching a full month in.

Good luck and please put some more thought into this.

I actually would say to do certain surgeries. For example, if her septum is deviated or turbinates enlarged, those would be worthwhile as she will even tolerate CPAP better. I did those surgeries. I also did a tonsillectomy with pharyngoplasty, and I did it in the presence of not too large tonsils (turned out to be a bit larger than we thought). If she had large tonsils, it would be worth a shot, and her best shot is being young and not obese. But I wouldn't do anything involving the uvula, per several doctors' recommendations. Also, my opinion is that if she does the tonsillectomy and still has residual SDB, she should try CPAP first, if only as a trial to see if addressing her SDB fixes whatever symptoms drove her into the sleep study in the first place. She may know that prior to the tonsillectomy, if she gets the machine in time to give it a good try.

As a middle aged relatively thin person who has sleep apnea, I agree with chunkyfrog as well about getting a second opinion regarding this or ANY surgery. You also need to check out this surgeon to make sure they are Board Certified, in this case in sleep medicine and as an ENT. My judge of a surgeon is if he tells me that this procedure will fix the problem and I will never have to see you again. Do not become the revolving revenue stream of a surgeon who is going to try multiple surgeries to correct a "problem."

Tonsils and adenoids are an important part of your immune system, that is why they do not remove them like they used to in the 60's and 70's. In my view CPAP is not the end of the world, it is a conservative treatment that is proven and works. Surgery has it's place, but it is not something to take lightly. Try the CPAP, see if it helps, if you can not tolerate it, then maybe surgery is an option, but have a second opinion first.

Some of the surgeries have the potential to negatively impact your speech, swallowing and sense of taste and smell.
They are extreme, and some surgeons will not stop until the patient is mutilated.

chunkyfrog wrote:
Re: young new user-wishes to hear tips from experts

Post by chunkyfrog on Tue Jun 05, 2012 10:24 am
Some of the surgeries have the potential to negatively impact your speech, swallowing and sense of taste and smell.
They are extreme, and some surgeons will not stop until the patient is mutilated.

And they only stop once the patient's wallet is drained. I liked my wife's neuro surgeon, who recently did her back surgery. He did everything to try to avoid the surgery, when the conservative treatments failed, only then did we go down the surgery road. The potential outcomes must greatly outweigh the risks of surgery, or doing nothing at all.

Bear in mind that CPAP is the GOLD STANDARD for treatment of apnea.
Anything else runs a distant second, fifth, or tenth.

Hi everyone! I finally got my machine today and tonight's the first night with it so wish me luck!I also put the stuff that I got in my profile. I'm not sure what humidifier or software I have but according to the guy that brought it he said its the newest one that's out.

I didn't see alot of the posts there. We did alot of research and I've had on and off problems for the past couple years with my tonsils. The left one has been enlarged for about two years and it causes a lot of ear problems. I also have a slightly deviated septum, but he said its so slight that he's not even going to touch it. My whole face is asymmetrical and he thinks not having my tonsils in the way will help with breathing at night. The UPPP is just a last resort if I'm still having problems with the sleep apnea after the surgery August. I really hope the CPAP works though because my school work has been majorly affected by my sleep deprivation.

I'm not against removing tonsils, particularly in a young person who should have a fairly quick recovery. Most of us older people here had our tonsils removed when we were very young as a matter of course.

UPPP surgery is a different matter, even some ENTs who do them (or at least did them) admit that they really don't work in the long run. You also need to understand that when you talk to a fishmonger, he's going to try to sell you a fish, not a car. In other words, if you talk to an ENT surgeon, what he is going to offer is ENT surgery. So you have to look around to learn if that's really the best solution for YOU, not for the surgeon's pocketbook. Be sure to get at least a second opinion from someone who understands that he will NOT be the one doing your surgery.

In addition, be wary of "success" language from surgeons. ENTs who perform UPPPs often say that they have a 50% success rate. So you and I, the lay people, think that means 50% of people who have this surgery no longer need CPAP--not bad odds. But what the surgeon means by the term "success" is a 50% reduction in CPAP pressure needs. That means, if only 50% of his patients have success in the first place, those 50% will reduce their pressure needs by half. Very few will actually get their pressure needs so low that they no longer need CPAP. It's very deceptive and confusing.

Good luck using your machine tonight. There's almost always someone online who can help if you have any issues.

hi lilbean95,

im a 26 year old and I have been on CPAP since 4/16/12, and its has been amazing. I sleep unbelievably well. I used to be awoken by my apnea every couple hours and I was also getting up to go to the bathroom alot, I was probably getting a total of 3 hours of sleep a night if I was lucky. Now I get 7 or 8 hours a night I don't fall asleep during the day Im not tired during the day, Hang in there it will get better. I actually love sleeping with my cpap because I know I will sleep well and feel great in the morning.


Good Luck!!!!

lilbean95 wrote:Hi everyone! I finally got my machine today and tonight's the first night with it so wish me luck!I also put the stuff that I got in my profile. I'm not sure what humidifier or software I have but according to the guy that brought it he said its the newest one that's out.

Good luck tonight!

Remember that your sleeping brain may take a few nights to learn that this is good for you. It has spent quite a bit of time standing on guard to keep you breathing at night so don't be to hard on that part of yourself if it doesn't step down immediately. Also you may want to spend some time wear the mask, even with the machine on and watching tv so that your brain and body get used that this thing is all ok.

Your skin may object too. Teenage skin is testy about strange stuff so you may want to create a liner out of some old tshirt. That will absorb any extra skin oils and protect your skin from the pressure. Wrapping the straps in fleece material also helps reduce the strap marks that fair skinned people get.